I have spent most of the day in tears. If I think about it, I have spent most of the last couple of weeks with tears mostly just below the surface. But today they escaped, and trickled down my cheeks when I least expected it. I think it all started because today was a special lunch event after church that I should have been at but could not attend. I did not want to abuse the generosity of our Sunday morning caregiver - he gives me 2 and a half hours every Sunday out of the goodness of his heart, so that I can attend service, and all he asks for in return is a cup of coffee. Maybe finding out that DH was delusional while I was gone contributed to my tears - he has been on a downward slide for the last couple of weeks, and it is distressing to watch. He was hallucinating about our children earlier in the week, so the delusions should not have come as a surprise. Maybe it was realizing that although he loves me, my hubby no longer NOTICES ME. I had a new purse and was wearing a new sweater today. He said nothing about my appearance. For that matter, I have lost over 30 pounds over the last several months (on purpose) and he hasn't noticed that either. Maybe its just a major buildup of stress from trying to hold my negative thoughts and feelings in all the time, in an effort to be as calm and positive around hubby as I can. Maybe its because missing the luncheon made me think of all the other activities I have had to give up in order to look after hubby - opportunities where I used to get out and talk to other people instead of listening to my DH try so desperately to say what he wants, and failing miserably. I used to be able to guess at what he was trying to say, so that we could have a sort of a conversation, but lately his contributions have been way off target, and I haven't got a clue about what he is talking about. Maybe its because Christmas is coming, and I have been thinking about the Christmases we used to have, and how much fun they were, and how now if we are lucky we will be able to see our children sometime over the holiday season, but we certainly don't go anywhere anymore. Maybe its because I have been thinking about winter, and all the work involved, and the hassle of cleaning the snow off the car and having to deal with bad driving conditions in order to get anywhere I (we) need to go. Maybe its because I am selfish. Maybe its because I care too much. Maybe its because I want desperately to be left alone. Maybe its because I am so lonely and want a hug that means something. All I know for sure is that I am profoundly sad, and I can't put my finger on why.
It is not hard to see why you are so profoundly sad just reading your list, and knowing what you are living. Not to sound corny, or too cosmic, but I find that the adage of just going right in to our fears, and our sadness, really helps. It is so hard when it starts and so scary, but if you cry it out or work it out or whatever it takes, you will have some relief.
Hi bqd Today and yesterday I cried like a baby.I kept thinKing, as you did of all the wonderful times we have had and the more memories came to me he more I cried. To day I went to see DH and I was only able to stay with him for one and a half hours as he doesn't want anything longer. I think we are lonesome for the loves we had and the hugs we got and the compliments that came so easily. That is all gone and we miss the yesterdays and fear the tomorrows. Dh wants to spend more time with me but finds it to much and takes away from his structures activities. I never thought I would come second to a walk around a LTC hall way or a coffee and conversation with a group of strangers. Maybe they are his family now. With This disease you just never know. Remember, we are special people and we are much loved by lots of people here on this site that we never see but know exactly how we fell. Be good to our self. Maybe it's time to consider LTC. I can enjoy my visits much more now and I am not so tired. Even an hour visit is better for me then before. Our relationship is not so volatile now. We are much better there and he keeps telling me that. LOL
Oh bad I, have been feeling the same. I can't do anything today and that is happening more and more.
I just want to get in the corner of my couch ( if I could I'd go to bed and pull the covers over my head). I think the holiday makes it worse. It's just more work and I don't feel the joy at all.
I know that stress of acting like we are positive and fine while we pretend nothing is wrong in front of our spouse And some others too. I am a very social person with lots of friends and usually lots of social activities. Now, I often don't even want to talk to my friends when they call. I feel too sad to act otherwise.
I also have no energy. I keep hoping the next day I will wake up feeling motivated and energetic.
There are just so many reasons I feel overwhelmed and sad. Then, I feel I have a lot to be grateful for And feel guilty. I remind myself, I am entitled to my feelings. We all are. We are not selfish but rather very Loving and caring people.
Watching this disease steal my husband just tears me apart and drains the life out of me. That is why I am so sad.
Trust your feelings. It's just part of the process of mourning. That is what my therapist has taught me..
There will be some days we feel better. We must have hope .
bqd I am sorry you are going through such profound period of sadness. Just let the tears flow when you feel like it. In my case family, friends and aquaintances first question to me is "How is Dennis doing?" Nobody ever asks how I am doing so I never get to vent about my feelings and that does make me sad. Tears and this web site are my only outlets for my sadness. I know in my heart that everyone hear understands. Before placement I broke my hand and had a bright green cast for six weeks and not a word about it was spoken by DH. As I carried on with the caregiver duties it made me mad and sad. I do hope you find a tiny bit of cheer during this holiday season but it probably won"t be easy with all of the whirlwind of caregiving swirling in our minds. Congratulations on losing 30 lbs! Be proud because that is a fantastic accomplishment. We are all here for you and we do understand. A great big (((hug))) to you.
I understand everything here regarding the sadness. I too feel so sad and I do think the season adds to it. I want to just fast forward and get past the holidays. I just do not want to drive anywhere or leave the house. I have to force myself to do things. Yesterday I met my son and grand children for breskfast with Santa and felt like a fifth wheel. Just could not get into it. I feel as tho I am just going through the motions. I spent 3 hours at the Alf on Saturday with him and came home emotionally drained. He is always glad to see me but has no idea of what it takes out of me to visit and act like all is well. When I left he tells me there is nothing wrong with him and he can still do things. He tells me about all the construction they Are doing at the facility but of course they are building nothing. I just nod and agree.
Bqd, you have perfectly described the emotional side of Alzheimer's spousing. I would make one correction. You are not selfish, so I'd put something like "maybe it's because I'm afraid I'm selfish." I think we all wonder about that one, but recognize that it comes from a legitimately impossible situation.
Thank you for reminding me why, on the * side of the journey, there is still PTSD to process.
Thank you all for your kind words and understanding. I knew that I could post here and that I would receive support, because everyone here truly does understand what I am going through and how I feel. Poor hubby asked me last night if I was mad at him! How could I be mad at him? He is not responsible for this terrible disease! But that question was enough to shake me out of my self pity and realize that I have to continue to show him my smiling, brave face, even if I can't show it to myself or to the rest of the world. I do feel a little better today, although the tears are just below the surface, and my puffy eyes are a good indication that tears have flowed recently. I've decided that today I should try to concentrate on counting my blessings. Hugs to you all.
bqd- This is how I feel each holiday season just thought I would share.
If ever there were a season that holds the emotions too near it is the season of holly jolly the season of Christmas cheer
Yet I am one among many for whom the season is confettied with tears the pain and the strife of everyday life has left many deep wounds through the year...
Yet we all have so much in common we share pain, we share hope, and despair We are in fact, "goin' through the motions" It is just hidden in "Happy New Year"....
Your poem says it all for me too! Can I let all know about your touching blog called "Living in the Shadow of Alzheimer's".... Sherizeee. Glad you are feeling better.
bqd Hope the support and understanding here lifts your spirits today.
I've had this subject bookmarked since i first read it - and now, this same feeling has hit HARD & FAST! I feel like I'm treading water, & going nowhere fast. I've really been trying to cut back on what I always have done, just trying to get the basics in place. Took me 3 days to put up & decorate a freekin' table top tree & the mantle! Sheesh! I made a list of things to eat on Christmas Eve & Day, but I've already gone back & scratched things out. I just can't handle it - it's going to be simplified. Now I feel like I'm letting others down, even though I know the important ones understand (kids). I guess that I feel that the world is resting on my shoulders (self-imposed), & I can't seem to shake those feelings. Burdened, overwhelmed, and, yes, guilty (I am my mother's daughter, after all). I would really like just to stay in bed until Jan. 2! I'm thankful that D. has been quiet, a little grumpy (understatement), but overall, not too bad. He seems to appreciate the decorating I did get done, so it hasn't thrown him. I just so understand the feelings of sadness, anxiety, tears ready to fall --- all of it. Even though I feel alone, I know I'm not, thanks to all of you.
This is such a stressful time of year, even for "normal" people, which we are not. As care givers, we are already under so much stress, and then we just add on the stress of the holidays to burden us even more.
Good for you to cut back on what you have been doing and simplify things. I have been doing exactly that. I didn't put any outside lights up this year - we are the only ones that can see them anyway. My DH has said very little about the decorating I have done inside the house, although I notice that when we get a Christmas card, he puts it on the window sill we have always used to display the cards, even before I get a chance to read them!
The children are coming up Christmas Eve, more to help look after their father than to celebrate the season. Then on Christmas Day we are going out to a restaurant for lunch. Another way to simplify - I won't be tied up in the kitchen for hours making the traditional holiday feast with all the trimmings and I won't have to worry about getting it all on the table at once, or doing up the dishes afterwards!
And you are not alone, Mim, we have the support of everyone here - the ones who truly understand our emotions!
Yes Mim I have those same feelings of being stuck and not getting much done. Then the feeling that I am letting others down and should be able to handle it ALL. I too have the guilt ( my Mother's daughter). I have cut back a lot on decorating since my DH can no longer do the lights etc. Soo Sad! I just don't have the spirit. I am still doing all the shopping and will get a tree this weekend. But it's hard to feel joy as I watch my Dh decline. Why wouldn't we feel sad? These are real feelings . But, as I try to remember, it's what we do with these feelings that matters. So I will try hard to feel them and then try to find joy in the moment. Strength and peace to us all!
Thanks, gals. I needed this tonight. It's been a real downer for me today (again!), wrote in my journal for the first time in a long time. I just feel so angry & moody & frankly, pissed off! At nothing in particular, but everything in general. We need milk, but I didn't even want to leave the house today to get it (too cold!!!). Tomorrow, it's no choice - I have to & I'll take D. with me to get him away from the house (he'll have to wear a cap, though - it's haircut time again, & until he agrees to get one, his hair makes him look like a lunatic!) Embarrassing for me I guess, but he doesn't even notice it. This used to be Mr. Neat...... I may be back another time to vent some more - you should see what I wrote in my journal!!
Mim, Come on back here and vent anytime you choose. We all are here for you. This disease is so cruel and IMHO it is most cruel to the caregiver. I hope your journey out tomorrow helps you and gives you a little relief from the ALZ nightmare. Be safe and a big (((( hug))) to you.
In addition to our normal, unescapable stresses of life, ladies, I think you all may be suffering a bit from Seasonal Affective Disorder (and a not so cheery Christmas season). It comes with the dark days of winter. I, too, have suffered from SAD for many years and this year my Naturopath prescribed an herbal supplement called Eskaloft for the SAD. I have to tell you that it did take about 6 weeks, but I all of the sudden noticed being pretty happy in spite of it being winter (and the other stuff we all have to live with). I'm optimistic and not crabby and pretty happy - I don't feel so darned defeated and trapped. Maybe you could give it a try, you can get it on Amazon (remember to buy from this site, though :)).
Good luck and I do hope you all start having a merry Christmas!
Thanks, Anchor, sometimes I need to be reminded that the reason I am going through this is because I care. Some of the feelings we experience in caring for our LO's make us forget - resentment, anger, frustration. These are not emotions one generally associates with caring. But yes, we feel the negative emotions because we care.
As many on this list have said, "better living through chemistry". Medications for our spouses get them more compliant and comfortable. And frankly, my friends, medications for us can do the same. The last year my husband was alive, I asked my doctor if I could please have an SRI - zoloft, or prozac or whatever, and he gave me zoloft which fortunately worked very well. I took it until the prescription ran out a few weeks after my husband died, tapering it off. Never needed it again but for that year plus it was a lifesaver. I got out of the "do nothing" mode and felt energy again. Do try, if you haven't. And try another if the first didn't work.
I seem to constantly be on a guilt trip. Hired someone to stay with DH while I went to Church. Then, felt guilty because I was keeping her from going, even though she said she would go on Sunday Night instead of Sunday Morning. Also felt guilty for leaving DH for the 2 hours while there. Okay, decided I would solve those guilt feelings. Called the lady I'd hired to not come the following Sunday. Started feeling guilty because I wasn't going to be at Church. (I'm also the treasurer there and people depend on me to write any checks needing writing, count the money, etc.) Called the lady back and ask her to come as usual. Now, feelings of guilt because I'm so wishy washy with my indecisions that involve other people's lives.
The word "Guilt" should not be in a caregiver's vocabulary. Every day you do the best you can do and that is good enough. To be a good caregiver you have to look after you first. You need some outside activities or you will burn out.
Carolyn, I remember hearing this several years ago & it's burned into my brain - "What I can do is what I can do, and what I can do is enough"
That's all any of us can hope for - do the best you can (& you'll know it in your heart), make decisions that you know are right for you, & be done with it. I have felt a lot of guilt also, but I've come to realize that just so I do the right thing for us, that's all that is needed. I also realize that sometimes, it's easier said than done!
I am new at this, but I have the same feelings. To add to the pain I asked DW to marry me on Christmas Day 1972. Every Christmas she puts on the Red snowmobile suit I gave her that day, when I promised to always keep her warm. It hurt so much I wanted to scream.
I have not had a drink since Feb 2010 when DW first started showing symptoms. But there are days...
So many feelings ..ever changing...a roller coaster of emotions. I know too well the hurt you feel Crushed. Our first date was a snowy, beautiful night just before Christmas. Every year we would go to the same restaurant on that date.
Not only does he not remember the date and place, he doesn't even know how long ago it was. This year I didn't even tell him. We passed the restaurant in December and I remarked how pretty it was decorated. No response.
Sometimes the pain is Soo deep. Sometimes I am numb, it seems unreal. Oh, how I wish it was.